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Wednesday, July 14, 2010

Separate, Not Equal

I read the following quote on the wonderful blog Wheelchair Dancer:

"I think disableds live with a lot of separate but equal. You know the
accessible entrance round the back, by the trash cans. The separate
and ineffective transit systems, because the mass transit is
inaccessible. I think of our lives as having a parallel track, one
which we and only we are able to see. On the good side, this parallel
track is the place of disability history and culture. On the less
appealing side, it is the place of isolation and frustration with a
world of environmental and attitudinal barriers. And somewhere in
there, I hear my voice, artificially bright and cheery -- I'm striving
for lightness and neutrality, but what I really want to say is
unprintable -- saying, "No, don't worry. I've got it. I just have to
do it differently, in my own way." I'm trying to convince the person
in front of me that what I am doing is valid and effective for me.
"No, honestly, I don't need your help. Thank you, though."

This struck a chord with me because despite my moniker bad cripple I am really not such a bad guy. I don't like to purposely hurt people. I do my best to not insult others. I am very polite with strangers. I consider myself a dedicated teacher, willing to go out my way to help students. But there is one thing I cannot tolerate--demeaning attitudes and a subservient social status based on nothing more and nothing less than the fact I use a wheelchair. Hence long ago I gave up trying to put others at ease if my mere presence was upsetting. I forcefully assert my civil rights when they are violated. I do this in a firm but polite manner that some have told me is a bit intense. I really don't care to engage those that want to help me when I obviously need no help. As a result I think I have perfected the "no thank you" that translates into an impolite buzz off. I have no hesitation to glare at people when I catch them staring at me. When the "special elevator" is filled with trash or locked I am not happy. I let the powers that be know it. I do my best to makes sure this seemingly meaningless problem is resolved.

What is the point of the above descriptions of my behavior? Reading the quote by Wheelchair Dancer made me feel happy. It is good to know I am not alone. For this is exactly how I am made to feel when my civil rights are violated--alone and singularly unusual. I know I am not the only wheelchair user in the world. I am not the only person inconvenienced. But this is what people desperately want to think--that people with disabilities are lone individuals, narcissists that unreasonably demand the world be made accessible. You know who I am talking about, people like Ron Paul and school boards that approve draconian budget cuts to special education. Or how about the New Jersey Governor who eliminates books for the blind? This is not what leadership entails but rather narrow minded thinking that hurts those most vulnerable. It is easy and dangerous to think this way. I like to remind people that we cripples are the only minority group that can be joined in the blink of an eye. This is a danger but a remote one. The real danger is social invisibility that is sanctioned by American culture. We crippled people are out of sight and out of mind. Hence, why spend the money on "special" education and making the social environment accessible is an easy argument to put forth. It is however a sound bite argument when put to the test utterly fails. But we live in a sound bite world that ignores and does educate people about disability history and disability rights. No one asks why do we not commonly see people with a disability in the work force, at school, and on mass transportation systems nationwide? I can tell you why--American society is hostile to the presence of people with disabilities. We choose not to employ people with disabilities. We choose not to put wheelchair lifts on buses. We choose to construct homes that are not accessible. We choose to provide substandard education to those with disabilities. We choose to create ineffective and costly paratransit systems. We choose to segregate children with disabilities in resource rooms. All these are choices we as Americans have made. We should be ashamed. We are needlessly destroying lives, an untold number of people have been lost. This is a social tragedy. And today, a gloomy rainy day here in New York I do not feel alone. I know Wheelchair Dancer is out there fighting the good fight. You go girl! Let em have it.

Monday, July 12, 2010

Continue: A Good Physical Rehabilitation Idea

continue from Jeffrey Rosenbluth on Vimeo.

I thoroughly enjoyed this short film about an myriad of adaptive sports and outdoor activities. The film, much to my chagrin, was made by Jeffrey Rosenbluth, a doctor who specializes in spinal cord injury rehabilitation. My personal bias would have prevented me from ever guessing an MD much less one that specializes rehabilitation made the film. Everyone knows rehabilitation medicine is a dead end medical career. There is not much positive I can say about physical rehabilitation aside from the fact that many physical and occupational therapists are very attractive and dedicated women who do an amazing job. They are the only inspiring figures in rehabilitation, a field I passed through long ago and hope to never return. Rehabilitation has changed radically since I experienced it in the late 1970s. Back then doctors, nurses, therapists, and social workers were struggling to figure out exactly what rehabilitation entailed. Adaptive equipment was primitive at best and choices severely limited. Yet there was a large measure of excitement. People with spinal cord injuries were expected to survive and thrive after injury. Wheelchair technology was about to explode with a dizzy array of options once the monopoly enjoyed by Everest & Jennings was broken. Adaptive sports gear was being created and there was real hope for the future. I was driven to work exceptionally hard in rehabilitation. I worked hard for a simple reason--rehabilitation is deeply depressing. One must work long and hard to relearn how to do the ordinary. This hurts one's ego and can be a shattering experience. Add in the fact rehabilitation settings are grim. Back in the 1970s rehabilitation was often done in an acute care hospital. A few rehabilitation hospitals existed but as far as I recall rehabilitation floors were common. This is where I experienced rehabilitation. I was the only young person surrounded by elderly people may of whom had strokes. Such a setting was not a bad place. I was scared to death and driven to get out.

Much has changed in rehabilitation--a veritable revolution has taken place. Yet I wonder if all the changes are positive. In the 1970s rehabilitation lasted as long as it was deemed necessary. Today, health insurance dictates care and the sort of adaptive equipment a person will use. This sends shivers down my spine. The durable medical goods industry is populated by crooks that sell inferior products to newly paralyzed people who know nothing about wheelchairs they will use. Rehabilitation setting have also changed. Gone are the rehabilitation floors in acute care hospitals. They have been replaced by rehabilitation centers in rural or suburban areas that are quite pretty. Gone by extension is the fear I felt provided by a grim social and physical setting. Thus I think rehabilitation hospitals provide social cocoons where one can, if well insured, hide from the real world. I cannot blame people though--the real world is a hostile place to people with disabilities.

The above memories were triggered by the film Continue. The film also gave me hope that at some rehabilitation centers appear to get the physical and social consequences to paralysis. Rosenbluth works at the University of Utah and directs the acute rehabilitation program. There he has set up TRAILS: Theraputic Recreation and Independent Lifestyles. I am not a fan of cute acronyms but I do like what TRAILS seeks to accomplish: the return to a healthy, rich and full life via recreational activities. For a newly paralyzed person they experience a shock to body and mind but it is the mind that really gets fucked. The mind more than the body must learn to adapt. People need to learn how to reject the stigma associated with using a wheelchair and assert their rights as a human being. This is not easy but I can readily imagine this transition being assisted by recreational activities. The feeling of equality is in part what draws me to adaptive sports such as skiing and kayaking. This feeling is liberating and for a newly paralyzed person I would imagine this experience can have profound and long lasting consequences. It is a return to being "normal", that is being an ordinary person. Society denies we paralyzed people our ability to be ordinary--we are reduced to stereotypes that belittle and demean us. Our choices are limited--at one extreme we are portrayed as angry or bitter and at the other end of the spectrum we are lauded as heroes that overcome paralysis. The truth is we are just like anyone else except we cannot walk, a physical deficit that leads to social denigration. I for one reject this inferior social status and hope through the program created by Rosenbluth newly paralyzed people will come to the same conclusion.